Planting a Seed

I think my plan of sitting here at my PC is actually helping, I have spent the bulk of the last two evening just playing games while watching TV and my back is showing signs of improving. As I said yesterday I took some ibuprofen and it actually did help, Adam suggested what might explain it as in the pain was now at a level that it could help, where as a few days ago it was to intense to touch it, he could be right. I have waited this morning again for my normal meds to kick in and I still have pains to the ibuprofen has just been added, I have noticed before that if you can stop something hurting it heals quicker, I guess this is because you stop straining the surrounding muscles and once all relaxed, it has a chance to heal properly.

I don’t know why it has taken my so long to understand something really simple, I have for years in fact nearly all my adult life in watching anything that is medical from documentaries through to soaps and drama’s. Saturday evening wouldn’t be Saturday for me without my dose of Casualty, I’m not sure of what made me have one of those light-bulb moments but I did and I suddenly realised that I started watching them all in the vain hope that I would see something that would give a clue to what was wrong with me pre my diagnosis, the strange thing was I never did. I have though learned a great deal about other conditions, so much so that I often have a diagnosis before the Doctors in the program I am watching, not that that make me a doctor just faster than the scriptwriters. It amazes my how much can be learned by selective watching, and you can choose almost any subject these days. It used to annoy me when I would sit at work and over hear chatter about the night befores viewing and how it didn’t matter what day of the week it was, I never heard them discuss anything of value, just wallpaper TV, there is nothing wrong with a mix, but so many seem to watch nothing else. I have been often asked how I know some of the stuff I do, well the answer is simple, I choose what I watch and I learn from all of it. I wish that Sky had existed when I was a child I would then maybe have had more opportunities open to me when I left school as I might of had a chance of knowing there where jobs out there outside the ordinary.

I suppose that is why I find it an irony that I have so much knowledge about so many things and so much experience in different work areas, yet I am sat here condemned to never being able to use it fully, or to be able to earn a living from any of it. I do fully understand that not many of us who are housebound wouldn’t be able to perform full time jobs, but I really do feel that around the world there is so much knowledge that is being wasted, and so many people who could contribute to others lives but we are left idling and isolated. I am not sure what exactly we could do but I was inspired by an item I saw on TV last week when a retired teacher was via Skype helping to teach children in India, I don’t think she was paid but I can’t be sure about that. What it did make me think about was the possibilities of harnessing the skills that are not being used and a way of giving some at least, the chance of contributing and achieving, rather than just existing, it could be a win win situation. The next problem is what and how to do it? I doubt I will be the person to come up with it but here is the seed planted and waiting, maybe you can be the one to make it grow. Think about it.

Life plus Drifting

There is snoring coming from the settee so therefore it is Saturday, lol. I sat here late last night, right through until 10 pm as I thought that sitting on the settee even with my added cushions where part of the problem with the pain in my spine, I wondered if it was possible that the harder higher seat might do less damage and allow more healing than the low soft settee, by using the past tense I know I have given away the result of that test, yet another broken straw. It seems as though I am having less and less success with my own attempts to fix things or maybe the it is just the pain getting to me a bit, but I am at more and more of a loss as to what to try next. I have again today just taken a couple of Ibuprofen as I tried them a couple of days ago and I think they helped a little. I keep trying as when I check on line the solution is to boost the meds by adding something simple, I don’t understand the chemistry behind it but it has to do with the drug combination, producing a higher pain relief, I have promised Adam that if I don’t have any significant relief by Monday, I will call the Doctor. I am you see quite sure that the pain from my pulled muscle in my back is healed, the pain I have now isn’t in the same place and is in reality the pelvic pain I have been struggling with for months now, just worse. I really expect him to say there isn’t anything he can do to help as he is so reluctant to up my meds and I am so reluctant to up them as well, but I can’t live like this for ever it is getting beyond silly.

I am not sure exactly how I am going to go about it but I have a hankering to do something different today, which with my vast array of things to do, comes down to spending most of the day playing computer games. I haven’t really played any for months so it might be some fun again. I have never been taken by the shoot-em-up games they just to be honest bore me but I do enjoy a good puzzle game, something that I have to think about and plan as I go along. I always thought that was why I enjoyed my work so much as all my days were basically spent working on big puzzles, then building software, which is another is another puzzle to be able to monitor and/or fix the situation. What wasn’t there there to keep an analytical, puzzle mad mind happy.

I have allowed my writing and twitter to take over much of my life lately and I am loving it but I think it will also do me good to take time out maybe every weekend to do something different. I suppose to be honest it has more to do with how much time I have more than anything, good days I have two to three hours to work on my book on a bad none. Everything in my life seems to be run by how my brain wants or doesn’t wants to work, so I have to accept that I have little control now over how well I manage anything on any given day. It is one of those things that has always made life with MS difficult as it is easy to make plans but impossible to know if you can actually carry them out. I am lucky with Adam on that point as he isn’t the type of person who likes to make set decisions about what is going to be done on this day or that, or even at what time, so my inability to stick to anything doesn’t bother him. I used to be the total opposite, I was totally the type of person who planned everything and got really wound up when or if it didn’t go totally to plan. I hated people being late for anything even by just a few minutes and I hated having to change anything I had planned. If someone had told me years ago that I would have learned to drift through not just one day but everyday, I would have told them they were mad, yet here I am drifting all the time and I don’t really care. I suspect that is one of the pluses of having brain damage, as it has removed that uptight to the rule side of me, which is a blessing, as otherwise I would be permanently wound up and in a state of frustration, now I just accept and get on with it. I was sure that like everything else in life, I would find a plus hiding in there somewhere.

Memory Soup

I realised yesterday that my memory has more gaps in it than I thought. I was doing some writing and mentioned something from the first few years of our marriage and I realised that I really don’t remember that clearly the first 3 years. My memories of my life when I was 12 or 22 are clearer than just 10 years ago, it isn’t like I have forgotten all of it but there are a lot of details missing and I mean a lot. I always used to prize my memory as I was one of those annoying people who would remember conversations from years ago but I found myself struggling on silly things like when Adam got his car and what year that was. He had a couple but doesn’t have one now as we really can’t afford what is in reality a huge luxury, but that isn’t the point I can’t even remember what year it was or anything around it to help me place it in time. I had noticed that in the last few years I had developed a habit of saying things happened 5 years ago, or 10 yrs ago when it wasn’t anywhere near that date and the bundle of years I allocated had more to do with giving it a date rather than my actually knowing, if you like an attempt to cover up what I don’t remember. I guess that was a way of denying that I didn’t actually know.

A perfect example was a treatment one that I think gave me a second change and you would think that something that with important, I would remember exactly when it was. I had reached a real low in my MS, again I am guessing here but I think it was about 2 to 3 years after diagnosis, the progression was running wild and I was in danger and I mean real danger of loosing my job, I even had a helper supplied by the EU to assist me in the office, not for getting around but to help with part of my job. At that time I had to supply the daily business stats, but I had a problem, for some reason I couldn’t spot errors in them and I mean the kind of error I would expect a 6yr old to spot. This lady arrived at my work everyday at 7am, by that time I had done the bulk of the stats and they needed checking, she would compare the day before to that days and if she found something I would fix it, once all were completed she would then run round the building putting them on all the required desks, so that when the rest of the staff arrived they were there waiting for them. It wasn’t just errors in the morning stats that the problem where confined to, they were just a victim of the situation, I forgot everything, I had a Dictaphone, pads, memory slates all kinds of things to help but between that and my speech slurring and stuttering, work looked as though it would soon end. Test were done and I scored really badly. I was then given a 3yr course of a chemo type drug Mitoxantrone, the drug suppresses the immune system and as it is the immune system that is doing the damage, it helps a huge amount. Without the fast acting new damage, the damage that was there has a chance to repair, I had a treatment once every 3 months and with each treatment more and more of me slowly reappeared. It wasn’t just my cognitive functions that improved but also my mobility improved slightly, by the end of my 3 yrs I felt almost, like myself again when it came to being able to function in a pressurised job and in everyday life. When I try though to remember anything that I think should be in that 5 to 6 year period I had real trouble doing so, as there is very little there.

To me Mitoxantrone was a wonder drug, it gave me back my life and although the damage was reversed it did start up again but at a slower pace, without it by now I would be in need of 24hr a day care, I was disappearing at lightening speed. I now know that I lost a lot of my life from when my MS took over badly, to I am not sure exactly when, but maybe the last year of treatment, MS stole it all. I can’t have the treatment again, it is a one off as it can badly damage your heart, mine now has problems of it’s own, so it is a total no. What I found yesterday though is I am loosing things again beyond the treatment as well. I know I have been housebound now for 5 nearly 6yrs now and that I was working for the first 4 of those years, but I can’t remember anything much of those years. Important things happened in those years I know they did, but the whens, and the whys have all started to become a mixed up pool. I think I would have trouble again with all the test that they do to check your cognitive skills. May be it is a good thing that I am now writing more of it down, as otherwise I may find it too late to get any of it in the right order.


Adam’s Mum came round to the house yesterday evening, it wasn’t until this morning that I realise I was probably a little rude to her. I was in so much pain last night and I made the effort to leave this seat and move to the settee so that I could talk to her and Adam, as Adam came out of the toilet she went into the hall to talk to him about the cardigan she had knitted for him, I sat with the pain rising all the time waiting for them to come back in but they didn’t. I suppose they were out there for 10 mins at the most then she announced she was leaving. So I stood up and moved into the hall to say good bye, I don’t really even remember how the conversation got there but we were suddenly talking about getting rid of unwanted clothing, I was really proud of Adam for at last actually throwing out two or three bags of stuff the other day, it has by the way taken him years to actually do it. His Mum dropped in that you can now sell bags of stuff and she got £20 for the stuff she threw out recently. I almost exploded, the thought that he might fill bags of stuff and have those bags sitting making even more mess in this house, even for a day just made me see red. I know she meant well but she just doesn’t see things the way I do when it comes to stuff like this, I suggested that she looked at the tip called our kitchen, she saw nothing wrong. No it is normal to not be able to see half the dining table nor pull a chair out as there is so much rubbish piled on and under it. At that I walked away as I knew I was about to burst into tears and start screaming at her, I have spent years trying to keep my home perfect but I have no choice these days other than to voice my disapproval to the mess I see, as I can’t physically do anything about it. There are tears running now as just writing about it, the anger has risen again, I have to wear blinkers to it but it is hard and without other here to see I cry a lot about it. It might sound a little odd but it isn’t the pain that makes me cry often, well not the physical pain but the pain that is caused by being useless for even the smallest yet important things in my life. No matter how far I go back, even when I had a baby or toddler in my home my house was pin tidy. I have never seen any excuse for things to be any less than perfect, so it hurts a lot to see it and be reminded every time I do just how useless I have become.

But that was no excuse for rudeness even when I have no control over my temper or any other emotion I still don’t see an excuse for it. The damage to my brain is rapidly becoming the thing that I am finding the hardest. I haven’t been in control of it for a long time but it is occasions like yesterday that remind me why I don’t really like people in my home, as they don’t know or understand any of that, and I don’t want excuses to be made for me, I am an adult and I shouldn’t have childish outbursts about nothing in front of others. I can’t explain myself all the time at the time it is happening and I guess because after she left Adam came and spoke to me about the pain I was clearly in, that he had quietly apologised to his mother and explained that it wasn’t me, it was the pain I am in that caused the outburst, correct but he should be running around whispering, as it all went quiet before she left, no one should other than me and I can’t live like that, a viscous circle, I know.

Adam and I for good or bad have set ourselves up in a cocoon that allows for my health, neither of us have to continually explain anything to anyone, including each other. He knows all to well what is happening to me, I know that but I still play games, hide things, cover things up, because I feel for both our sakes I have to. I feel safe when I am alone or with Adam, add anyone else into the mix and I am scared of exactly what happened yesterday, a perfect example of how out of control my brain is when it has to interact, without the space of a computer screen, with the outside world. These are the tough things to think about and talk about, I am not a nasty person, but I can’t take any stressed encounters without biting back in a way I would never have done in the past, I am scared as I don’t know how I will be in the future, if I am already unable to deal with 15 to 20 mins of a relative how long before I won’t be able to stay in any form of control with anyone at any time. The world is a scary place when your own brain does things you can’t stop it doing.

Stepping over the blue line

This morning I actually got success in phoning the OT department when wrote to me exactly 3 months ago saying I was on their list and would be seen as soon as possible. It seemed to take her a while to find me on her system and when she did she said that it normally takes between 6 and 7 months to see someone in my position. I know that they deal with people who aren’t just chronically ill but dieing, but on the system of those who are worst off, without any assessment of those they set as an appointment sometime in the future, I will never get to the top of it. She read to me what was listed as the reason I needed to see an OT was simply due to my MS and Fibro, no mention that I can’t sit without constant extreme pain. It will be clear form what I have written in the past few months that the pain in my legs and backside is truly extreme, and that it is not through lack of trying to deal with it and I have done everything that I can to find a solutions. At the minute my back is adding to this but it is now almost as it was before, but what has happened is that the pain in my pelvis has been made worse by it. I am tempted to call the Doctor and source more painkillers but as I have said before I am not keen to go continually down the line of more and more meds.

None of the things that we have to rely on the NHS for here in the UK is as smooth and as fast as we might like and if it is sometimes hard to keep saying to yourself they are doing what they can, at times you want to scream at them do more and do it now! What I don’t understand is why I can’t have a med regime that allows me to have pain control during the day at a level I can function and higher relief in the evening when I am tiered and can’t deal with it. I have asked several times if I can have some sort of boost which I can take when it is at it’s worst, not everyday at the same time. I can really feel that your illness has to fit what they do, or they can’t help you. I think I am old enough and wise enough to know myself when and when not I need something to deal with my pain. Why is it so hard for them to understand that? I really do understand why so many resort to the illegal route if cannabis, if it works for them well it is their choice to take the risk of being prosecuted for it. I have a real dilemma when it comes to cannabis, firstly I really don’t agree with breaking the law. I have through out my Adult life had great difficulty doing anything that is illegal, and on the odd occasions I have knowingly stepped that line I have felt terrible about doing it. At a party when I was in my late twenties I tried cannabis, I only took two or three draws and it simply put me to sleep, not something I really want and the guilt I felt the next day made that sleep of no use what so ever. It has been suggested to me many times that I should try it again but no matter how bad the pain is I couldn’t deal with the knowledge is was illegal. Yet here I am an adult who isn’t allowed to have the pain relief that I need when I need it, so yes I do see why others might take the risk, but it is not for me.